Could This Be Anything Other Than Herpes?

[jbaker9922]

In 2012 I dated a girl who neglected to tell me she had HSV2 before our first sexual encounter. She told me after the fact she was visually diagnosed with HSV2, but was never diagnosed via blood/antibody test. My nightmare began about a week or two after our first sexual contact. I experienced a very pronounced and painful cool/burning sensation in my groin, sharp twinges and tingling in the urethra, felt fatigued and nauseous for weeks following. This occurred before she told me she had HSV2 (to clarify this was not anxiety induced). Weeks later the burning/cooling sensation continued in my groin, genitals and upper thighs. A strange rash/bumps appeared on my face and gradually moved during the course of a few weeks (it followed a straight line). However, this rash was not a typical fluid filled herpes looking lesion, just firm red/brownish bumps in a line. During the next few weeks my eyes began to water non-stop, burning so badly I could barely keep them open; this continued for weeks. Approximately 4 months after initial exposure I was tested for Herpes IgG; to my amazement it came back negative. Years later these symptoms continued, but were less pronounced and I likely grew accustomed to them. About two years ago, a strange bumpy rash showed up along my spine on my lower back, upper thighs, buttocks, and lower stomach. This to me screamed sacral herpes since it apparently goes dormant in the sacral ganglia. My doctor has looked at the rash numerous times, as well as my dermatologist, who both assured me it was not herpes. I tried numerous steroid creams, loprox for a possible fungal infection, and made no difference. My doctor has no idea what is causing the nerve pains in my urethra, aching testicles, or burning sensations in my groin. The aggressive rashes on my thighs and back have caused significant hyper-pigmentation. The symptoms never seem to go away, they are constant. The strange thing is, I've never had a rash on my genitals and never had a typical herpes fluid filled cluster of bumps or lesion. The bumps and rashes I've experienced have presented as a circular ring on my stomach, and hard round ulcer type bumps on my upper thighs/buttocks.

I've been tested a total of 5 times for HSV1/2 via IgG and Western Blot, as well as every other STI (including HIV) on a typical panel. Each time it has come back negative.      

I feel as though I'm living a nightmare and the symptoms are painful and psychological debilitating. I haven't been in a relationship since 2012 for fear of passing this on to someone else. I feel as though I've exhausted all options and my doctor and dermatologist are at a loss, yet still assure me it isn't HSV.

Do these symptoms sound like an aggressive form of herpes? Could it be anything other than herpes? I know for a 100% fact my ex gave me something, and I'm literally going crazy trying to find out what it is and put an end to these symptoms so I can get on with my life.

Any help would be greatly appreciated!

[auntiejessi]

I absolutely totally agree that you don't have herpes. You've tested negative on several IgG tests and the WB.

What is causing your symptoms? I don't know. It could be an entrapped or pinched nerve, an allergic reaction to something, prostatitis, among other things.

Have you had other testing done? Other blood work? An MRI? Can the derm biopsy this rash? I'm surprised this hasn't happened already, to be honest. Is there a reason why this hasn't happened?

It's not an STD. No STD would give you symptoms like this.

I'm going to move this to our Undiagnosed Symptoms community to see if others can help you.

[jbaker9922]

Thank-you for your response, it's much appreciated. I have had other blood work done (all checked out), I have not had an MRI, and just recently had two skin samples taken for biopsy (still waiting on results). When you say it isn't an STD, I would like to believe that and tend to agree. However, the timing when this all started is far too coincidental to be something unrelated in my mind. Severe genital pains, tingling, genital itching, cooling/burning sensations in the groin two weeks after initial exposure; feelings which I had never experienced in my life. Not to mention the hard bumpy rashes I have on my upper thighs, lower back along my spine, and lower stomach all radiate around the groin region. I suppose I'm skeptical about the accuracy of HSV testing in general, it seems a bit impossible for them to know the true accuracy since not everyone produces the same number of antibodies to trigger a positive test result (at least from what I've heard). I was hoping for a diagnosis of syphilis or something curable, but it came back negative for that too. The rashes are the most disconcerting because they've left severe hyper-pigmentation which won't go away. I even asked my doctor to try a course of antivirals, which did nothing. If the symptoms had cleared up years ago, I would let it go and move on. It's honestly hard to describe the kind of pain it is, it's very strange and unlike anything I had felt prior to my first sexual encounter with my ex. She told me she exhibited similar symptoms and was visually diagnosed with HSV2, unfortunately that's all I have to go on.

I wish I could lend my symptoms to my doctor for a day so he would take me seriously, haha. I know it's frustrating trying to diagnose something when all tests come back negative, but there must be a more definitive test for HSV than IgG or WB...? I think I'm looking for a positive diagnosis for my psychological health at this point. I realize HSV2 isn't curable, but I want to know, so I can try and move on.

Again, thank-you for your response and I will look into your other suggestions. The only other thing I can think of is an STI which is maybe less common and not typically on a standard STD testing panel.

[auntiejessi]

It's not herpes. You've had several tests, and different types of testing. If you had it, one of those tests would have found it. The WB is the gold standard and most definitive test. If you are negative on that, you don't have herpes.

The only STD you might not have tested for is mycoplasma genitalium. That's an emerging STD. There is a new test for it in the US - https://www.fda.gov/news-events/press-announcements/fda-permits-marketing-first-test-aid-diagnosis-sexually-transmitted-infection-known-mycoplasma I know you aren't in the US, but if you show that to your doctor, it might help him test you.

But please don't limit your focus to STDs. There are so many other possibilities, and you are doing yourself a disservice if you don't look outside the STD box.

[Negativehsvtests]

As someone who suffers from anxiety as well. I read your story as if I was telling it myself. You do not have herpes. The igg and western blot both came back negative. Both tests are very good for hsv2 and the western blot is the best you can get for hsv1. Just because your ex has herpes does not mean she gave it to you. Don’t miss out on being happy Bc you have convinced yourself you have a virus that you don’t actually have. We only have one life to live. Believe your results and move on!